My Story

Photo by Hanna Snyder

*Takes deep breath* Okay, first off, I can’t believe that I am doing this. I’m about to tell you a lot about how I was raised, what I went through, and what I’m going through. But I’m also going to tell you probably my deepest secret that only a handful of people know. It’s something that I don’t talk about for many reasons. I will also start off by saying that I have always wanted to do this post since the very start of my blog. I just had to wait for the right time…and there is no time like the present, right? I will also give a fair warning that this blog post is a very long one, so give yourself some time before you start reading it (please).

Before I get started, I think it’s important to walk you through my childhood and what it was like to be raised by someone who has a mental illness. My mom has Frontotemporal Degeneration (or FTD), which is the most common form of dementia for people under the age of 60 (source: The AFTD). This is a disease that runs in my mom’s side of the family; her father, brother, and one of her sister’s have all died from this disease already. To better explain the disease to you, I will share a quote from The AFTD:

According the The Association for Frontotemporal Degeneration (theaftd.org), “FTD brings a gradual, progressive decline in behavior, language or movement, with memory usually relatively preserved. Although age of onset ranges from 21 to 80, the majority of FTD cases occur between 45 and 64. Therefore, FTD has a substantially greater impact on work, family, and the economic burden faced by families than Alzheimer’s. FTD’s estimated U.S. prevalence is around 60,000 cases (Knopman 2011, CurePSP), and many in the medical community remain unfamiliar with it. FTD is frequently misdiagnosed as Alzheimer’s, depression, Parkinson’s disease, or a psychiatric condition. On average, it currently takes 3.6 years to get an accurate diagnosis.”

With my mom’s case, her speech and emotions are heavily impacted by the disease, yet her memory remains to be okay. For example, I can ask her what she did yesterday, and she would be able to tell me. As for her behavior, emotions, and speech, she will typically act like a child. When I was a kid, I was mostly afraid of her because I never knew what mood she was going to be in. I also only wanted to be with my dad and would cry if I didn’t get to be with him. The stereotypical roles of a mom and a dad were switched in my household. My dad did the laundry, dishes, and any other cleaning there was to do. He also was the one to take my sister and I to school in the mornings and wouldn’t let us leave the house until our hair was brushed. My mom would be the one that would sit on the couch and watch sports and drink an adult beverage when she would get home from work. My parents fought a lot and there was always yelling in the house. At home, my mom would become angry easily and yell at us (us as in my sister and I). I sometimes had to run away from her because I was afraid she was going to hit me. It was hard for her to be active, I remember her sitting and watching TV a lot as a kid and wouldn’t always follow through with what activity she said she was going to do with me. If we were out in public, my mom would typically put on an act for other people and behave accordingly to society standards (but not all the time). So if I were to say anything negative about my mom to my friends, they wouldn’t always believe me. Even when I first started dating my now husband, Chris, I would tell him about my mom and he didn’t believe me until he saw it for himself.

Another symptom that my mom portrays is that she doesn’t always respond right away if you start talking to her. She will typically just stare at you and it might take her a while to respond. By age 8, I started helping my mom communicate in public places. I remember being mortified when my mom wouldn’t respond to the grocery store lady when they would ask “paper or plastic?” The grocery store lady would then look at me with a shocked face, thinking that my mom was just being rude, but really it was part of her illness. My mom also doesn’t always think rationally and may not think through her decisions. My whole life, I also have never trusted her to drive me. As a kid, I was terrified to get in the car with her, but obviously, you have to when you are just a child. There were so many occasions that I can think of where my mom was driving us and would get lost and would start screaming at my sister and I in the back seat. Sometimes she would just stop in the middle of the road and we would have to guide her where to go or to simply pullover to get out of harms way. When I was 12, I begged one of my uncles to teach me how to drive so that way, I could take over if my mom ever had a meltdown in the car. I was also that kid who always had a doctor’s appointment to go to so I was constantly being driven around by my mom. I was a healthy kid, but had horrible vision and teeth that needed a lot of work. When I was 15, my mom thought she could go around a car that was parked in the center of our driveway and ended up crashing into our sprinkler system and the side of the garage. But she didn’t realize that she crashed and thought she could still go around the other car, so she continued to floor the accelerator and despite us all running outside to yell at her to stop, she wouldn’t stop. My dad had to physically pull my mom out of the car to stop the car and the water that was shooting out of the sprinkler system. My mom has blocked this event out of her memory, so if you were to ask her about it, she would say that it never happened.

My mom also had a bladder problem when I was a kid (& even up until I was a teenager) and would sometimes only realize that she needed to go to the bathroom until the very last minute. If we were in a public place, she would then have to squat down on the floor and try and hold it and yell at me to find her a restroom. Do you know how embarrassing that is when you’re a kid and/or teenager? I remember one time she did it in the parking lot of my high school after one of my cheer practices. One of my cheer coaches saw it and came up and asked me if everything was okay. I assured him that everything was fine, but was still mortified that he saw it. I also tried to not invite my mom to all of my performances or social gatherings because I was unsure of how she would act and didn’t want to take the chance. As a teenager, all of my friend’s mom’s were amazing and would always offer to drive me and take care of me. I did heavily rely on my dad to drive me as well, but he also had a full time job and wouldn’t always be available.

Fast forwarding to my adult life, I should also share that my dad has now developed dementia as well but his case is not FTD. He just has typical symptoms of dementia like memory loss and angry outbursts. I believe my dad got the official diagnosis in 2014, when I was 24 years old. My mom’s diagnosis took a while because she was able to put on an act in front of various doctors and would fool a lot of them. Again, not all doctors are familiar with FTD, and in the beginning they would only say my mom had “mild symptoms”. This was and is still extremely frustrating (to say the least) to have to go through as an adult child that had to go through my childhood as I did. My mom was a nurse and almost got fired from her job because she kept denying that she had FTD (she is still in denial of the disease). I obviously can’t go into detail, but in 2015, something happened at my mom’s job where she did not follow proper protocol for a certain situation and was placed on administrative leave for months. My mom’s last living sibling (my Aunt Nancy-who does not have FTD) even flew out here from New York to help out with taking my mom to a few doctor visits that helped get my mom the diagnosis and ultimately, did not get my mom fired from her job. My mom was eventually forced into retirement at the age of 62. This time was particularly stressful to me especially given the fact that I was in college. I remember I had group projects during that time in which I barely participated in and it still kills me to think that my classmates probably view me as a slacker, when they really had no idea what was going on at the time. We then helped my mom apply for social security given the fact the she has a disability and she was quickly denied. We hired an attorney who eventually helped my mom get the benefits she deserves. It may sound easy, but it was definitely a long and stressful process.

In February of 2016, my mom’s sister Amy, who did have FTD, passed away. She was in a nursing home and could barely move. She couldn’t speak or feed herself and was only 62 at the time of her death. But right before she past away, my Aunt Nancy had the medical staff draw some blood from my Aunt Amy so it could be tested to see if she had a gene mutation that is known to cause FTD. Her test results came back positive. The gene mutation is called C9orf72 and is associated with FTD and ALS. When my grandpa passed away at age 74 in the 90’s, his cause of death was said to be ALS because he could not move, but also had FTD symptoms of which were not known of back then. My mom’s brother died in his late 50’s because he also had FTD, and was in a nursing home. His cause of death was ALS as well. After my Aunt Amy died, that was the first that my family and I have heard of the gene mutation. Because my mom was (and still is) in denial of her FTD symptoms, she decided to get tested to see if she has the gene mutation. Her test results came back positive. My family and I knew this was going to be the case, but my mom was not happy about it and threw a fit when the doctor told her the news.

A few months later, I decided to get tested myself. I’m not really sure why, but I was somehow drawn to getting tested. Plus, my family encouraged me that there was no way I was going to test positive because I portray so much of my dad, rather than my mom. I scheduled an appointment to go over my “family tree” with a genetic counselor and to also get my blood drawn for the test. I didn’t really think anything of it, so I went by myself. After going over everything, the genetic counselor made sure I wanted to follow through with this because she said that once she processes everything, she can’t take it back or change it. I assured her that I wanted to do this. She then told me, “If you test negative, you won’t hear from me. But if you do test positive, I will call you to schedule an appointment.”

Before I move on, I want you to think about that. And if there are any genetic counselors reading this, I beg you to never ever say those words to a patient. Here’s why:

About 2-3 weeks later, I got a call from my doctor’s office. On the phone was a very nice and cheerful receptionist, asking to schedule an appointment with my doctor (if you’re wondering, I’m already crying as I’m typing this). My heart sank, because I knew what this meant. I scheduled the appointment and hung up the phone and immediately started freaking out. However, I did not cry (even though I wanted to) because I had to be at work within an hour. I showed up to the school that I still work at today, and pretended that nothing ever happened and that I was fine. But on the inside, I was dying. Once I got home, I could not help but to start balling my eyes out.

Friday, June 10th 2016 was the day of my appointment. My results; positive. To me, it is considered to be the worst day of my life. Chris (who at the time was my fiancé) and my sister came with me to the appointment. It was the saddest day, I could not stop crying..I still can’t stop crying even looking back on it as I’m typing it out now. My doctor was so nice about it, which makes me cry even more because he was so kind. I wish I could say his name, but I want to protect him as I’m going to tell you what he did next that may not be allowed in the practice that he works for. He told me that he would not update my medical chart for another week, so that I could try and get long-term disability insurance in my name. Because once my medical chart is updated, no insurance company will want anything to do with me. I eventually tried calling a few insurance agents and asked them about getting long-term care disability. They first asked how old I was (at the time, I was 26) and they all pretty much laughed in my face and asked what made me want this type of insurance. I quickly got out of that conversation and immediately started crying once I hung up the phone.

What this means, is that the chances of me getting either FTD or ALS or both, are very high. It also means that my years on this planet are significantly decreased compared to a regular person. I should start showing symptoms in my mid 40’s, and considering the lifespan of my family members that have been affected by FTD, I’ll be lucky if I make it to 60. In order, my family member’s ages when they died were 74, 59, and 62. My mom will be next (she will be 66 in April), and I will most likely be the 5th family member. Yes, there is a chance that I may not ever show symptoms, but we will never know until the day comes. There is currently no cure for FTD.

The day after my doctor’s appointment, I felt so low. I could not leave my couch and had no interest in doing anything. I remember even asking Chris if he still wanted to marry me, being that I was going to turn into my mom and he would have to take care of me one day. He assured me to not worry about that (he’s an angel). Sunday morning came, and I was still feeling so depressed. But then I turned on the TV and saw the terrible news of the Pulse Nightclub shooting. I was devastated and thought to myself “Look at me, feeling so depressed about something that’s not going to happen to me for another 20 years, and look at all these innocent people who just wanted to go out and have a good time and end up getting murdered”. I ended up getting out of my apartment that day and going on a hike with Chris and my parents. I did not say a word to them about my test results.

I eventually told my mom about my test results when I was in a doctor’s appointment for my mom. My mom is in a study at UCLA for people who either have the FTD diagnosis or who have tested positive for the gene mutation. While in the room with my mom and the doctor who is the director of the study, the doctor asked me if I would ever consider getting tested. I froze, and I’m also a terrible liar, so I caved and told my mom the truth. She immediately started crying. I am now part of this same study and yes, I am the youngest participant. This is what my UCLA visits are for if you have ever seen me post about it on my stories. This is also the reason why I have to have an MRI every year.

So why am I putting this out there for all of the world to see? Well, in hopes that it will help someone out there. Maybe you know of someone, or maybe that person is you. Part of the reason why I held back from sharing this was the obvious reason of being judged, but I was also afraid that any future job wouldn’t want to hire me because my time here is so limited. But the thing is, I’ve been trying to find a second job for a while now and still haven’t had any luck. I also think that had I not found out, maybe I never would have started this blog. After I found out that I tested positive for the gene mutation, I thought of the things I really wanted to do in life. Starting a blog was one of them. This is why I included the picture that I did. That picture was from the very first photo shoot I did with a professional photographer and it was from the very beginning of my blogging journey. If you would like more information about the photographer that took that picture, visit her website here.

It’s definitely hard to be a caretaker for your parents who both have dementia, along with knowing that I will end up just like them (specifically my mom). I have no choice but to show up, move forward, and hope for the best. I once heard Maria Shriver say the words “Your genes are not your destiny“, and although that’s a hard pill for me to swallow, it still gives me hope.

If you know of anyone affected by FTD, please feel free to share this blog post with them on my behalf. And if you are interested in learning more about FTD, please visit The Association of Frontotemporal Degeneration where you can also donate to help find a cure if you are able to.

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8 Comments

Darla

March 12, 2019 / 12:16 pm

You are beyond your years of course bc you have been forced to grow up fast. I must say I’ve always loved you and have seen you as a very kind, beautiful young lady with great poise. I would have never had guessed. Thankyou for sharing and being in a study to help others with the same diagnosis. I will keep you in my prayers and hope you stay strong and healthy without symptoms for a very very long long time. Love you sweetheart. You are so brave. 😘🙏🥰💜

Thank you for sharing your story! Absolutely heartfelt and so full of emotion. Your spirit is so resilient and positive despite everything and I truly believe everyone should live their life that way. Sending you big hugs! ♥️

Thank you so much Allison! That is so sweet of you and yes I totally agree, we must all be resilient and positive, no matter what life throws at us. Thank you for reading and for your sweet comment. xoxo